PROUDLY SUPPORTING PEOPLE AFFECTED BY BREAST CANCER FOR 25 YEARS
B CNA is all about people, so in this BCNA through the eyes of our network – our members with a lived experience of breast cancer, families that carry on the legacy of their loved one, health professionals providing care, and other important supporters of our work. Read about key moments that have defined our network as we have grown into the organisation we are today, while also paving the way for what we will achieve in the future. special edition of The Beacon , we wanted to share the story of BEING A STRONG VOICE Our role in advocacy is critical to improving outcomes for all BCNA has been a leader in consumer-led advocacy in the cancer sector and paved the way for many other consumer advocates and organisations. Given breast cancer is a disease with such a widespread impact, BCNA has had the ability to galvanise a strong collective voice of people from all walks of life. BCNA’s advocacy for equity of access to all breast cancer drugs and tests began with a campaign for a drug known at the time as Herceptin (trastuzumab). Families were mortgaging their homes and selling their possessions to afford access to this life-prolonging drug. OUR STORY SO FAR
OUR COMMITMENT TO UNDERSTANDING THE REAL ISSUES
BCNA released the Financial Impact of Breast Cancer report, helping to highlight this key issue. We continue to work to reduce the cost of breast cancer by working with Cancer Council Australia, other cancer agencies and government. Some of our successes include Medicare rebates for MRI scans for young women, breast prostheses reimbursement programs, and lymphoedema compression garment subsidy programs. Importantly, ongoing events such as BCNA’s Think Tank create further platforms for discussions with consumers to help us understand the evolving issues affecting those with breast cancer, and prioritise and plan our ongoing efforts. OUR VOICE IN ACTION With so much to be done, our Policy and Advocacy strategy helps to focus our efforts. From July 2023, we will enhance our work to support ‘living well with and beyond breast cancer’ with one key focus being those living with metastatic breast cancer. Australia’s cancer registries do not routinely collect stage-at- diagnosis or cancer recurrence data. This means that we do not know how many people are living with treatable, but not curable, metastatic
If we were to estimate a previous average cost to patients of $50,000, this has potentially saved families a total of $1.6 billion. It has, literally, saved lives and livelihoods. – Kirsten Pilatti, BCNA CEO
We continue to seek insights from our network in lots of different ways, from travelling to rural and regional locations, to national surveys and partnerships with researchers. All this collectively contributes to an evolving national picture of the issues affecting those with breast cancer to ultimately help to improve outcomes. BCNA’s landmark State of the Nation report in 2018 aimed to map where progress had been made and where more work needed to be focused. The report – the biggest study of its kind for BCNA or any consumer group in Australia – was informed by a survey of over 10,000 of our members. We continue to leverage the findings of this report to inform our advocacy and create opportunities for partnership in the sector. WORKING IN PARTNERSHIP TO BRING ABOUT CHANGE The financial impact of breast cancer has been an ongoing issue since BCNA began. Out-of-pocket costs are often significant, particularly for people who have their treatment in the private health system. In 2017,
THE POWER OF LIVED EXPERIENCE TO INFORM,
In 2001, BCNA led the network to successfully lobby and work with government, health professionals and the suppliers to have the drug subsidised for people living with metastatic breast cancer; the real-life stories of those impacted were central to the success of this campaign. Access was granted, giving those with fewer treatment options renewed hope of more time with their loved ones. Responding to a developing evidence base, in 2006 BCNA led a second successful campaign to have the subsidy expanded to those with early breast cancer. As a result, more than 32,000 Australians have accessed trastuzumab. This advocacy set a precedent for strengthened consumer and clinician-led advocacy that has brought countless other breast cancer drugs onto the Pharmaceutical Benefits Scheme, with successes including Tykerb (lapatinib) in 2008 for HER2-positive metastatic breast cancer and Trodelvy (sacituzumab govitecan) in 2022 for triple negative metastatic breast cancer. Without government subsidy, these life-saving and life-prolonging treatment options would remain out of reach for many. For more information about BCNA’s advocacy work, visit bcna.org.au
INFLUENCE AND DRIVE CHANGE
V icki Durston with Andrea Smith at the launch of Making Metatstatic Breast Cancer Count, 2022
The establishment of BCNA’s Seat at the Table program in 2001 provided the opportunity to ensure the consumer voice is involved whenever there are decisions or discussions about breast cancer internationally, nationally or locally. This formal training program elevates consumer representatives to be more than just storytellers, and to represent the broader experience, and strategically influence research, policy and service provision not just in breast cancer, but across the health system. ‘Becoming a consumer representative also embodies connectedness, knowingness, humanness, and hope. I now have the privilege of representing every one of the 20,000+ women, men and families who will be affected by breast cancer this year, and every person still impacted by cancer years after finishing treatment. My voice now speaks for others in the hope that it creates improvements in patient experiences.’ – Jodie Lydeker, BCNA Consumer Representative BCNA provides a number of opportunities for people with lived experience to get involved. Find out more here.
breast cancer, leading to this group being ‘invisible’ to policymakers and health service providers, despite having significant unmet needs. Last year, BCNA released an issues paper, Making Metastatic Breast Cancer Count , which calls for improvements to the collection and reporting of cancer data so that we can advocate for improved services for this group and ensure they are ‘no longer hidden in plain sight’. ‘The release of the issues paper was a bold and clear statement from BCNA of its commitment to addressing the lack of data on metastatic prevalence in Australia. This work flagged to a lot of people with metastatic breast cancer, who perhaps did not think BCNA represented them, that the organisation is operating in this space and takes this issue seriously.’ – Andrea Smith, BCNA Consumer Representative living with metastatic breast cancer We know we still have much work to do to ensure that the voices of people with diverse experiences of breast cancer are heard. Our Lived Experience Reference Groups, including metastatic, LGBTIQ+, and rural and remote, support our advocacy work with their diverse real-world experiences.
Herceptin advocacy in action, 2006
State of the Nation launch, 2018
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
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